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[Konijntje]

If you react so strongly to estradiol, do you think Zoely will be any good? You’d be taking a medium estradiol dose all at once.

I think you said Slynd didn’t work for you, but not sure if it was because of the progestin or for another reason? If it wasn’t the progestin, you could look into Drovelis, it has 3 mg of drospirenone and estetrol (E4) as the estrogen. Estetrol is supposed to come out next year as a standalone for hrt, but that is obviously not an option right now.
The good things about estetrol is that it has a long halflife and levels will be very stable (drospirenone has a long halflife too, so for both hormones it will be very smooth). I didn’t get any nausea at all from estetrol, (I do from estradiol, especially oral, because I think I metabolize it too fast.) not even at the start, which is weird for me, I get nauseous from almost anything.

I don’t think Drovelis is available on the nhs, but I did read a lot of reviews on the lowdown (whatever that is, I’m not in the UK), so it should be available as birth control.

For me, the estetrol dose was too low once I got suppressed and the diuretic properties of the drospirenone gave me eczema. If not for that last part, I probably would have stayed on it and supplemented with transdermal estradiol. I did supplement with oral estradiol for the last month, that is why I know oral estradiol is not a good fit for me. So instead of switching to qlaira (which was next on my list), I switched to standalone dienogest + oestrogel. My ovaries woke up from the switch, so my first month hasn’t been great, but I do have hopes that this will work ok for me (I do have side effects, like stomach issues, bt treating those with a PPI).

[CrispyChick]

Thanks kon

Interesting reading. In answer to your question - no. I don't think zoley will go well  .

I get the same reaction to all hormones. E or  natural P. I get intense nose pressure migraines with E or synthetic. So realistically I don't think any of the pills will work. I went through all the older ones about 5 years ago. Literally all of them.

I've just looked at drovelis. Yes, seems like I could buy it. But I know I tried elione (same P) and it was bad. So I doubt it's for me. Also sound made me do so dizzy I couldnt hack it. I don't know if that's from the diuretic or anti androgen profile or what. 

I prefer the idea of separates. But in order to supress I need more than my 75mg desogestral. And, as I can't tolerate the add back E, too much supression leaves me in agony.

I totally accept that zoley would be throwing in a med dose of E. So it'll all just kick off.

I think that's my reality. I either ride it out. Or just keep retrying and circulating through hell as I do so.

So, this dienogest - that's the progestin in qlaira? But you are taking as separates? Great idea. So is dienogest in the same disease as it would be in qlaira?

I'm not sure I'd get dienogest. It looks like it's only licensed for endo over here.

I'm not sure any of this will improve my situation anyway. The progestin i tolerate ok is desogestral. But at 75mg I've got no supression. And I don't tolerate add back E.So it's all such a mess.

Zoley is just a desperate attempt to buy some time before I see the expert in Jan 

Thanks for sharing your trials. It's so demoralising being so sensitive.

[CrispyChick]

Right. You've made me rethink kon.

I think my answer lies in re suprssing. But I'm.scared, as the side affects were bad. But - it was a quick supression. I went from zero to 2x cerazette.

So. Perhaps now I crawl up slowly. Extra 1/4 then extra 1/2.

Then. If I got supression, and the experts are agreeable, I may be able to try tiny dose estrogen gel. Add it in very slowly.

Id rather wait until I've seen the expert. But I am desperate.

Anyone any thoughts on this bizarre plan???

[Konijntje]

Yes, I do think your plan sounds good, if you know 2 gives you suppression, but too much, somewhere in between might be your sweet spot.
For me, in terms of stable estrogen feeling, lenzetto feels most stable, then gel and then patch (I do get a skin reaction from the patch, so that could contribute to the absorption going a bit weird). Gel would be easer to measure out if you’d want to start even lower than 1 spray of lenzetto (which is less than 1 pump of oestrogel). And oestrogel is working quite well for me regardless of feeling slightly more uneven compared to lenzetto. (I’m very sensitive to fluctuations).

The dienogest I got is the one for endo too, because that is what it’s licensed for (but it has a very strong progestogenic effect on the endometrium, so it’s superb at keeping the lining thin), here when a gynaecologist prescribes, our (mandatory) health insurance pays, even if it is off label. But it is also an anti androgenic like drospirenone, so if you think you don’t respond well to anti androgenic progestins, it might not be a good choice anyway.

(I do seem to respond ok mood wise to the anti androgenic progestins, but do have some less favourable effects like increased vaginal dryness and even less libido (was already very low), so I’m going to discuss androgens at my next appointment. Not sure if it will bring me anywhere (testosterone is only very rarely prescribed here and we don’t seem to have vaginal dhea here), so I am prepared for a “can’t help you with that” and bought a dhea cream myself).

[CrispyChick]

Thanks kon.

Yes. I guess, although it's going back round in a circle, supressing using this tool I do tolerate (desogestral) is possibly not a bad idea. There is no point swapping my P. It's supression I'm lacking.

And keeping the E and P separate. Not a bad idea.

If I swap to zoley - it will be a nightmare. I know it will. I guess you've made me see this.

I can spot a few things that, through all this horrificness, are now better that I've stopped messing:

Mood - I get hideous crying episodes now. True peri. A bit fiat at times. But I'm not narky or horrible to family any more. I've not got the rage I get when I make a change.

Stomach and nose are much calmer now I'm not changing things.

So probably a slow climb back up to supression is right for me.

Is there a difference in supression though? Can you have a lighter supression at say 1.5 pills versus full on supression at 2x dose. Is it not simply supression versus no supression?

Which country are u in kon? I'm so interested to hear how your system deals with someone so sensitive to hormones in peri. X

[Konijntje]

I’m in the Netherlands, we have a mandatory health insurance system, people that can’t afford the insurance, get subsidised, so they only have to pay a small amount.

We have to go to the GP for everything, they are the gatekeepers, I think this is similar to your NHS?
When my GP couldn’t help me anymore within the guidelines, she referred me, I could choose where I wanted to go myself. The clinic I chose had a waiting time of 3 months I think, other hospitals were a bit longer.

The gynaecologist prescribed what I wanted to try and was available (I wanted to try Duavive first, but that had just been discontinued here). On my last appointment she said she was referring me to her colleague, as menopause isn’t her area of expertise and she felt she wasn’t guiding me enough. So next monday, I first have an appointment with her, because prolapses are her area of expertise (and I’m not sure if I have a prolapse or just severe atrophy, so need that checked out) and then with the new one about the hrt.

About suppression, I do think there is a range of suppression, because when women that are not in (peri)menopause take certain pills, they don’t have low estrogen symptoms, while we do, so it’s not like the ovaries are completely shut down by the pill. Chemical menopause is a complete shutdown and even young women will get low estrogen symptoms. However, I haven’t read enough about how this works, so these are just my theories and I could be totally wrong.

[dangermouse]

I would go with the 1.5 Cerazette.

I still think they are right at the other clinic and it’s too low prog, I think many of us fall into this (particularly if you look how low our levels go in peri compared to E), however, it is is not as simple as using natural progesterone as that just kicks off stimulation of oestrogen receptors and/or it starts donating to the whole hormonal cascade.

Getting E down to a level you can tolerate without it kicking off too low E may be easier to hormonally manage than full suppression and adding back E. It is hard with the volatility though but progestins do act more on a day to day basis and are probably easier to manage than natural progesterone. I could feel the difference from one day on Brevinor and the next on Loestrin.

I can see you want to try suppression first though so you can, perhaps, return to the 1.5 Cerazette, as a Plan B, if the suppression doesn’t work out.

[CrispyChick]

Thanks girls.

DM - I'm not sure I follow. I can't try 2x desogestral again, as the supression was too strong.

On one I gave absolutely no supression.

But, because I'm.so sevsitive. I think I'll need to creep up slowly.

Do we really think adding an extra 1/4 or 1/2 a cerazette will work? Will it calm my cycle? Reduce the fsh?

I think if I go too fast, I'll just boom and bust again. So I'm thinking try extra 1/4. Test. Then another 1/4.

Not sure how accurate these quarters will be though

I'm such a mess right now. I feel sure this is my perimenopause on nothing. 😬

[CrispyChick]

And then I just think: sod it.

When I look back, every change makes me feel like this - my own hormones, adding pills in to try and supress. So I'll feel like hell whether I'm trying to supress or not.

Which brings me back to just chucking a stronger pill in and being done with it. So back to considering zoley.

I feel i'll just go round on this merry go round for a long time. 

I think I need to go something. My own fluctuations are keeping me in hell.

I guess, I'm already in cerazette - so easier to trial another increase if that. Perhaps straight to 1.5 is best. Then test supression. If Iain returns, I'll know it's low E and need to act somehow. It cant happen twice and not be low E.

Yes. I think I'll increase to 1.5. Cerazette.

Decision made. 

How many weeks to start supressing??? About 4???

[flo69]

I spent a while on the HRT merrygoround too, it's not fun.

I'm sure I mentioned it before, sorry for repeating, but have you tried tibolone?

None of the HRT crap they churn out did anything but make me feel awful.

I was given tibolone as a like it or lump it alternative, as such I expected it to be as bad if not worse.

It was my golden ticket to getting my life back.

I can only assume that women on tibolone aren't on this forum because they don't need to be, it is recommended as first line treatment for anyone sensitive to the usual hormones, which are incredibly hard to live with.

It seems safer from the scant studies too, but who knows?

[CrispyChick]

Thanks flo.

Are you able to give me a bit more background?

What were you struggling with? What happened when you tried HRT???

Yes. This is interesting. I've looked at it a few times, but it sounds so mysterious. It scares the hell out of me.

Also, I'm not post meno yet. I still think my body is overreacting to changes, not levels themselves. Are you post meno or still peri???

I'm not suffering, in the main, from low E symptoms. Yes I now have some, but they're not my main problem. If it is hornonal, mg main problem is fluctuations. With my own still moving around, I'm not sure tibolone would help...

Many thanks.

[dangermouse]

I have a small insight to offer:

Oestrogen (oral and transdermal) → increases cholesterol saturation in bile + slows stomach emptying.

It stimulates the gallbladder and causes bile reflux (not acid reflux), in those sensitive to increases in bile flow/vagus stimulation, so could be the reason for your stomach pain/sinus pressure/migraines.

Also, bile instability → reflux → vagus activation → migraines + nausea + cortisol spikes.

I checked if this gallbladder stimulation decreased as your body gets used to it but it doesn’t. I now know why I cannot tolerate it at all so can now let go of the notion of ever trying oestrogen again.

I’m currently doing well with activated charcoal, as this mops up excess bile, histamine, endotoxins and stops oestrogen from reabsorbing in the bowels (to stabilise the oestrogen–cortisol feedback loop). Sometimes you just need to go for a really practical solution!

[CrispyChick]

Interesting DM.

I'm not convinced in my case as it's natural progesterone kills my stomach the most.

But, I suspect I'll never be able to take estrogen either. It's definitely the cause of the awful nose pressure - some sort of mast cell issues I think.

So I'm now on day 9 of 1.5 cerazette.

Huge difference already. I can tell I'm more stable, less dramatic fluctuations.

However, I'm already heading straight back to chronic back pain and fatigue. Both plagued me for months in the summer after I started on 2x cerazette. Almost as bad as the fluctuations. But not quite. 

But I plan to keep going. Give it a real shot. Get my FSH and E tested in a few weeks to compare.

It's quite vital info ahead of seeing top hormone expert I think. Especially as desogestral is the only progestin I tolerate. 

[Mary G]

dangermouse, that's very interesting.  It's really important for women to know that HRT (both oral and transdermal) changes bile composition and the way the gallbladder works/empties and it often means loose bowels.  This might be unpleasant at times but it's not dangerous and it actually means you excrete cholesterol leading to lower serum cholesterol levels.  It actually has an antioxidant effect too which is why women on HRT are less likely to contract bowel cancer.  I consulted a gastroenterologist a few years ago and he explained it to me. There are a lot of oestrogen receptors in the gut and HRT wakes them up.

Crispy, it's good that the Cerazette has improved things for you even if it's not perfect.  It's also worth getting your LH levels tested too because it's important to suppress that along with FSH. 

There is a definite but very complex connection between migraines, IBS, loose bowel movements, FSH and LH levels.  Cerazette will suppress your endogenous oestrogen levels which is probably why your are getting aches and pains again.  If you add in exogenous oestrogen later on Cerazette should not suppress that - at least I know it's doesn't for me.  I'm not surprised natural progesterone (Utrogestan?) had an adverse effect on your stomach.

I'm amazed at just how good Cerazette is.  I decided to try it after bomb posted about it on here and it's really kept my migraines (brainstem auras) at bay coupled with a higher dose of oestrogen and calcium channel blockers (Verapamil).  I've just had my extensive annual health checks and my new HRT regime along with the Verapamil has improved all my blood test results from last year.  Even my thyroid levels have improved not that I had a thyroid problem as such.  FSH and LH were both very low too.

I wonder I'd you might be able to introduce oestrogen at some stage in future because Cerazette creates a stable hormone environment meaning you should be able to introduce it once you hit the right Cerazette dose.  That's definitely one to discuss during the appointment with the hormone specialist.

[dangermouse]

So I have always had issues with digestive enzymes, ox bile, Vitamin D, taurine etc as I have had slow gastric emptying (causing, plus made worse by, SIFO/Candida) so was always trying to find something to speed up my digestion. I have the opposite of the fast bowel issue with constipation - so having to be very careful with not overdoing the charcoal!

All the above plus oestrogen, and now prog cream, cause immediately silent migraine and Chat GPT suggested it’s a hypersensitive gallbladder–vagus axis and that pathway triggers migraine for me.

The prog cream is now immediately an issue as:

Oestrogen receptors are still volatile (even though levels are low). Even after menopause, the brain’s oestrogen receptors don’t die — they become more sensitive because they’re under-stimulated. So when progesterone is added, it shifts the oestrogen–progesterone balance abruptly, and the brain interprets this as a rapid drop in relative oestrogen.

I can’t seem to win! I think I just have to accept any stimulation will make me feel dizzy and nauseous. Understanding about the bile also makes sense as I have had overlapping symptoms with a friend who had to have her gallbladder removed.

It was more the stomach issue I thought may overlap with you Crispy.

So glad the 1.5 Cerazette is helping and I
am curious as to how you would be if you add back E. If it works maybe I’ll brave it in the future!